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October 1, 2015 - Hard Work Goes Hand in Hand With Harvest & Plenty

Perry awakened intermittently throughout the rest of the night with assistance needed for connecting him to the vent with disconnect alarms, position changes, & covering & uncovering him. I can always sense when he's looking over at me. Glad I could comfort him, reassure him, & meet his needs. The Nephrology team plans to check his labs in the AM to determine if he'll need dialysis tomorrow (Friday). They are going to increase his Lasix dosage starting today. They were informed of his continued complaint of feeling as though he's not being able to urinate although catheterized. Such may be occurring due to the pressure caused by the balloon of the urinary catheter, bladder spasms, &/or enlarged prostate. Unfortunately, he is not able to yet have the urinary catheter removed due to his hand tremors, lack of dexterity, & lack of hand/arm strength to utilize a urinal. Dr. McCurry (Cardiothoracic surgeon) soon rounded with Dr. Dar (Anesthesiologist Intensivist). A bladder scan will be done & medications may be ordered if he is having urine retention. Perry was shown X-rays of his lungs from last week & today which showed improvements of the atelectasis (partial collapse/deflation of lung's tiny air sacs known as alveoli in part of his lungs) relative to the pleural effusion (pressure caused by fluid buildup between his ribs & lungs). Atelectasis commonly occurs after surgery & anesthesia, presence of mucus plugs, prolonged bed rest, shallow breathing, respiratory weakness, & chest injuries...therefore all of the above in Perry's case. They would like to see Perry completing 2 hours of trach collar breathing at each attempt. It is not as if Perry is not trying, not wanting to attain that goal, or not "pushing" himself to work harder to attain that goal - he's giving it his all & doing the very best that he can. At times I get extremely frustrated because I feel as though Perry is being talked down to & that he's being told he needs to try harder as if he's not giving it his all. If they only "knew" him they would not be addressing him in such a manner because their approach & words are rather insulting not to mention there are so many other variables affecting the attainment of this goal. His abdomen continues to distend when he is undergoing trach collar breathing as he is a mouth breather so that increases pressure on his lungs...which increases the difficulty to trach collar breath... & so it goes. I inquired about his positive result for the Epstein Barr virus which was negative pre-transplant. He completed several reps of leg squats at different inclines on the Moveo during PT this morning. Dean said it was the best he's ever done so far!!!! We are starting to see some activation & a little bit of tone to his quads too. Tina, Dean's assistant, was telling me that she had given Perry some extra TLC during his PT session yesterday by giving him a lotioned back massage while he was sitting at the edge of his bed. Dean said, "She doesn't do that for just anyone, so you know he must be something special." Also Denise, the Nurse's Aide who typically gives Perry his bath, shaves him, trims his hair (including his ear/nose hair), & lotions his back, legs, & feet was a bit upset that his day shift RN, Ian, had completed his AM care. And then of course Ms Jackie fusses over him too!!! That "Smooth Perry!!" He was able to take a nap before tuning into the Cubs game ~1p. He was transferred into chair @ 125p & began trach collar breathing @ 130p. The Cubs game helped to distract at intervals when he wasn't trying to focus on breathing. He was able to complete 75 minutes worth. He again gave it his all & had to stopped due to abdominal discomfort & I could smell sourness from his stomach with each exhale. Exhausted he again almost immediately fell asleep as I put him in chair mode in his bed to try to help decompress his distended abdomen. His bladder scan was completed with a small amount of urine retention; however the scan was done several hours later after having the complaint. Dr. Udeh stopped in to see Perry & is trying to facilitate a plan for Perry to have a change of scenery for a short bit while he's on trach collar breathing on our anniversary as well as plan to allow him to talk for short intervals as he continues to progress & gain strength. The placement of a different trach was also discussed as the cuff on his current trach is beginning to leak more frequently. He continued to sleep intermittently into the evening. Our previous neighbors from J5-5 CVICU, Bob & Karla visited as he will be discharged to home tomorrow. We are wishing them well as they too have been given the gift of life!!!! Hard work ahead for them too!!! It was a successful & progressive Thursday & the start of a new month. Wishing you all the best as we all prepare to harvest & gather!!!! It was definitely the feel of a Fall day today here in Cleveland!!! Our love to all of you!!!!

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Comments (2)

  • Dennis G. Barker
    Dennis G. Barker

    What a love, what a story of joint dedication. You both fill our days with enjoyment, for you both are giving it your all. God carries you both ever forward towards the days that hand in hand you will return to Cleveland Clinic to not only see your wonderful friends that are truly doing What The Almighty God created them for. To help, aid and through their training CURE OTHERS!, You will be living proof! Success is at hand!

    3 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    You go girl - others do not know Your Perry the way you do. You know he's pushing himself as far as possible. No one wants to get well enough to move onward more than Perry does. Baby steps but forward. E-hugs, tons of prayers. Love, Joni & Ken

    3 years ago · Reply

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